Medicare* have without warning or explanation retroactively ended my access to insulin via the insulin pump which I depend upon to live. Moreover, I don’t have any clear explanation of why they are denying this. I have been diabetic for about 50 years and I was born with multiple birth defects related to my spina bifida, so medical challenges have been persistent throughout my life. I believe the 70 surgeries I have had during my 68 years probably contributed to my developing diabetes. My latest C-peptide test indicated virtually no naturally produced insulin in my body. I am also very insulin resistant and unable to take drugs that would improve this because of a heart condition.

Suddenly and retroactively, Medicare refused to pay my pharmacist for the large amount of insulin he sold me in November 2013 and then again in February 2014. The first appeal was denied with no explanation. I began working with the representatives of my Congressman in early March and have only now gotten a bit of an explanation. Medicare changed their guidelines in October 2013 without notice to anyone and now considers the admittedly large amount of insulin I use to be “medically unlikely”.

Medicare previously suddenly refused to pay for my supplies for my insulin pump when I was in a hospital for a while, using the excuse that the hospital should have supplied my insulin pump needs. Other excuses have been used which caused me to have to pay for my medical supplies for a short time.

I believe, as insulin dependent diabetics, we should demand that insulin be always available, even to citizens without health insurance. Insulin is not like other prescription drugs. If you don’t need insulin and you take it, you die. If you need insulin and you don’t get it, you die. Insulin must be carefully handled because it is perishable. Also, unlike most drugs, there is no such thing as generic insulin. For all these reasons, insulin needs to be accounted for in a separate way from other prescription items.

On an individual note, I would urge any of you who are dependent on Medicare to always keep a fair stockpile of your supplies. Arbitrary decisions are less upsetting if you have some extra in your home. Fortunately I am not poor or I would be in much greater trouble.

I recently received the results of the 2nd appeal to Medicare. It was denied and seems to indicate that they believe I was never previously on Insulin pump therapy paid for by Medicare. However, the evidence was submitted and is also in their own records, stating that I have been on this therapy for almost 8 years—continuously using the pump and submitting claims to Medicare for it that were paid.

My qualifying low C-peptide levels were proven almost 8 years ago, as my original certificate of medical necessity shows. This form was submitted in both the 1st and 2nd appeals. A person with low to zero natural insulin does not need to keep repeating the C-peptide test because no one magically cures themselves when they have lost this ability.

People with diabetes are well aware of looming diabetic complications and now that Medicare wants to destroy my successful program of controlling my blood sugar I am even more fearful of them.